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Tuesday, December 6, 2011

I am still here

I have not written for some time, at least not on the blog. I find it presumptuous to admit that I am writing a book. First, everyone writes a book. I see them everywhere. So it always feels strange for me to say that. Somehow it seems even more narcissistic than writing a blog. To say that I am compiling my memoirs sounds even worse, as if I am some important political figure or Nobel laureate. Suffice it, then, to simply admit that I am writing the story of a doctor who becomes a patient, and what he, and his wife, learn from it. As I write, I think of the audience as my future grandchildren. In twenty years this may give them a glimpse into who was their grandfather.
This, and other things, have distracted me from writing here. The Velcade is working well on my amyloidosis, but numbs me psychologically and emotionally. This would frustrate me if I cared more. I no longer have a clinical practice in the urology department. I still work three days a week treating prostate cancer with radioactive seeds and breaking kidney stones as well.
We spent a wonderful Thanksgiving in Phoenix with Alexandria and Jeremy and will have the rest of the family here for Christmas.
Life has become somewhat routine. This, of course is wonderful. It allows one to predict and plan for future events. I still have some difficult days (I had a very difficult weekend in Houston last Friday but recovered in time for my flight home.) But I always seem to get better.

For that reason, I may not write consistently on this blog in the future. This effort of recording our journey has been therapeutic and essential in helping Barbie and me survive this experience. The support of so many who have read and commented here is nothing short of miraculous. So many lives have intersected ours through this medium of the minds. I have mourned with those that have lost their dear ones to this merciless disease. We all fight the good fight. It will eventually take us all, but not before we learn who we really are through the struggle. It is not a contest of who has the most days. It is simply about how we live today. Sometimes we submit to horrible treatments for the hope of more tomorrows and, in so doing, give up some good todays. This is always the most difficult decision for all patients, all doctors and all loved ones. When is it enough? I am trying to find that balance myself. How long should I stay on Velcade? Should I always take it with Dexamethasone? Can I take chemotherapy holidays? Is this treatment actually prolonging my life? How low do my light chains need to be to indicate that it is working? I would go with my gut, but sometimes that fails me too. (As it did in Houston last Friday.) I am left with having to rely on faith as I stumble into the dark. Certain paths just feel right, so I continue on them. I don't worry too much. God has guided me to where I am. I trust that He will so continue.

There are so many of you dear, dear readers who have shared your prayers, your thoughts and you losses with me. I will always be here for you. If I can ever provide advice or support, a medical reference or just a listening ear; I am here.

My e-mail address is kray0819@gmail.com
My cell phone number is (916) 412-8416

When I finish the book, I will find a way to make it available to those that might be interested in reading it. It essentially fills in the gaps between the blogs to complete the middle of the story, as the ending is still unknown.

With all my heart, I thank you.

Kevin

To Elle, I am so sorry for your loss. Please e-mail or call me.

5 comments:

me said...

It seems we were in the same place at the same time. My sister turned 30 and I was in Houston last weekend as well. We sure do miss you and Barbie! We will definitely be interested in reading your book! Hope you have a wonderful Christmas!

Emma and Dan said...

I'm sad to miss out on regular updates, but I suppose that will give me more incentive to call and say hi.
I'm happy about the book; I think it's a great idea. I'm glad that you were able to recover from the difficulties that you had in Houston. We love you!

Dena Heath said...

Ahhhhh.... I'm so sad to know you not planning to keep up the blog. I really looked forward to your posts and I always came away so inspired and full of hope. I hope you will still join us at our meetings 1n 2012 (schedule coming out soon). Pfizer asked me to join their patient advisory board for the new TTR-FAP drug Tafamidis and I was at a meeting in Atlanta for that two weeks ago and this past weekend we had over 600 hematologists approach our Amyloidosis booth and seek out information or just talk about amyloidosis. It was our most successful medical conference so far. Even the new head honcho of NORD came and talked with us for a half hour. Regarding not knowing... one thing to keep in mind is are you having more good days than not good days. I believe you have many good days still ahead of you. Dena

Dena Heath said...

Ahhhhh.... I'm so sad to know you not planning to keep up the blog. I really looked forward to your posts and I always came away so inspired and full of hope. I hope you will still join us at our meetings 1n 2012 (schedule coming out soon). Pfizer asked me to join their patient advisory board for the new TTR-FAP drug Tafamidis and I was at a meeting in Atlanta for that two weeks ago and this past weekend we had over 600 hematologists approach our Amyloidosis booth and seek out information or just talk about amyloidosis. It was our most successful medical conference so far. Even the new head honcho of NORD came and talked with us for a half hour. Regarding not knowing... one thing to keep in mind is are you having more good days than not good days. I believe you have many good days still ahead of you. Dena

Aunt Renie said...

I've read this 3 times and am still coming back for an update. But I read more meaning into this blog each time, so it's still beneficial. Sending you & Barbie lots of love and prayers for a wonderful 2012.
love from your favorite Aunt Renie